My son will be starting LDN. I have been researching this, but interested in knowing thoughts of those on it and what dosage you started on.
Posted by valymemom (Member # 7076) on :
My son is to start this, also, so I, too, am interested in comments.
Posted by viva (Member # 8183) on :
up for comments. I have also heard this mentioned in reference to cancer treatment.
Posted by Robin123 (Member # 9197) on :
You can go read at [email protected]. Everyone reports on ther experiences taking ldn. Most have ms and are able to stop the progression of the disease. It boosts the immune system. And it is being used for people with cancer, autism, etc.
What I see is it works for some people with Lyme and not others. I have also called one of the leading doctors who works with it and he said the same thing.
Doses vary between 1.5mg, 3mg and 4.5mg. I like Skip of Skip's Pharmacy in Florida. He's one of the most knowledgeable compounders in the country.
Posted by D Bergy (Member # 9984) on :
I have been following the LDN thing for awhile since I am trying to get a prescription for Crohn's.
It is just as already stated, that it works for some and not others. It will not cure Lyme, but can reduce symptoms.
I think whether it works or not depends on if your immune system is dysfunctional to begin with. All LDN does is normalize your immune response. If your immune response is not impaired to begin with, it is likely not going to help.
D Bergy
Posted by sonwithlyme (Member # 10942) on :
My son's immune system is on vacation and now needs to come home (as our LLMD put it), so hopefully this will restore his immune system.
Posted by luvs2ride (Member # 8090) on :
I looked hard at this some time back and approached 3 doctors about it. None of them would prescribe it for me saying it wouldn't help in my case. I was very disappointed not to be allowed to try, but without their prescription, I was stuck.
I hope it is successful for your son. Your doctor has some reason for believing it will be. Please post your results.
Luvs
Posted by Robin123 (Member # 9197) on :
luvs -- Skip of Skip's pharmacy(www.skipspharmacy.com)can give you names of doctors in your area who will prescribe, if you want to try it.
Posted by sonwithlyme (Member # 10942) on :
My son took his first dose of 4.5mg LDN tonight. I am so worried about side effects. I found out there is only 1 pharmacy in our area that compounds, The Medicine Shoppe. The pharmacist there was very nice when I went in to pick it up and was curious as to why he was taking it, since I am pretty sure she didn't think he was taking it for drug addiction. So we had a nice chat about Lyme Disease. Of course she was totally amazed of what my son has been through for the past 3 years, as most people are.
Posted by Truthfinder (Member # 8512) on :
I've told a couple of people here with MS about LDN - not much interest. I even bought the Up the Creek With a Paddle... book about it and loan it out to people. We have a lot of MS here in my part of the country, along with other autoimmune disorders.
Sonwithlyme, the 4.5 mg. dose seems kind of high for a starting dose..... I'm sure there is a reason behind that. Please let us know how he responds. Let's keep our fingers crossed. Posted by listenswithcare (Member # 10719) on :
I have been on LDN for about 2.5 months now. At the 4.5mg level. My LLMD said I may experience some trouble sleeping for the first week, but then it should subside. If it continued, he said he would lower the dosage.
I am not sure I have noticed much from the LDN, except for lowered pain levels - which I'll take any day. It did bother my sleep the first week some, but my sleep is not great in general anyway.
I have decided to continue it for the 3 months. I think one place I read was that after 3 months, your body would have righted itself again and the treatment can stop. But, my LLMD wrote a prescription for me to continue (if I wanted to).
I think I need to read up on it a bit more myself.
I got the flu last month inspite of being on it (and transfer factor and beta glucan), so.....???
I don't think it is harmful, so why not give it a try.
Robin
Posted by valymemom (Member # 7076) on :
Robin
My son may have the same llmd as you see. If your pain was lowered, that is great.
Posted by D Bergy (Member # 9984) on :
I would not worry about side effects. Other than some insomnia issues in the beginning LDN has virtually no side effects.
It has been used safely in amounts at over ten times what you would use for Lyme. It is a drug with virtually no downside.
One thing to consider is that it is an opiate blocker. If you need pain medications or have surgery you want to notify the anesthesiologist or doctor of the medication. Many pain killers simply will not works if you are using it.
D Bergy
Posted by jenin98 (Member # 12617) on :
My son has mercury poison (also known as autistic spectrum disorder). He is 11, and we have been treating his disorder biomedically, which includes LDN. ironically, I tested him for western blot via igenex 2 months ago (after I found out I had it), and he was IGG positive, but has not really ever had lyme symptoms. I know, I know, people say "induced autism/lyme" etc....but, my son went through the typcial normal infant, and regressed after the mercury filled vaccinnes, and the dmsa challenge tests, hair tests, etcc all showed high mercury, so it is not from lyme, However, I do believe the b12 shots, tons of vitamins, and LDN I give him, are keeping the lyme at bay. AND, Dr. Jones told me via consultation that if he has no symtoms, we don't treat with abx, and that his immune system will KILL the critters on its own. Jenin
Posted by dmc (Member # 5102) on :
the founding Doctor in NYC was mine for 2 years before finding out lyme. 4.5mg started to cause stiffness so Dr. B. lowered dose to 3.0mg.
He was thrilled when I found Dr. P and found out lyme caused my "MS".
Got to make sure it is a fast release...alot of people got messed up (not effective) with slow release, and of course take AFTER 9:00pm.
update- we are on day #8, Dustin is definately having trouble sleeping and is having "Major Mood Swings".
Posted by D Bergy (Member # 9984) on :
Thanks for the update. From everything I have heard about LDN, his side effects should go away soon. The body has to adjust to the change.
I hope you get some of the good results I have heard about from other users.
D Bergy
Posted by Truthfinder (Member # 8512) on :
Thanks for the update, Robin.
Ditto to what D Bergy said.
Posted by Parisa (Member # 10526) on :
Any updates?
Posted by Parisa (Member # 10526) on :
Any updates?
Posted by lou (Member # 81) on :
So, does this really only work for people who have MS-like symptoms from lyme, or are other lymies helped? The doctor who said it would not help a specific case, did he say why? Does anyone know which lymies are helped and which are not? Does it depend on symptoms? Or trial and error?
Posted by kissis (Member # 4165) on :
I have been taking LDN for almost 2 years, I was early on diagnosed with M.S. and then many years later tested positive for Lyme. So is Lyme/ M.S. one in the same ? I dont know, but I do know the LDN has stabelized me from geting worse and I do have more strength from it.I started at like 2.5 ml and gradualy increased to 4.5ml. I have ran out a few times of it and I notice increased stiffnes without it.
Posted by PinchotGail (Member # 5066) on :
Good question. I'm anxious to hear from Robin about Dustin. I'm not sure if he's still taking or not.
Dustin is in our support group, and he along with 2 others are currently on LDN. The other 2 are adults, but I would not say they were M.S.-like in the beginnning. They both see Dr. S and his associate (doc just published his book) in MD.
Gail
Posted by luvdogs (Member # 9507) on :
I am posting for a friend who can't go on computer right now.
My friend has been using LDN for the last 6 months - he is a Lyme patient with MS-like symptoms, weakness, chronic fatigue, post-exertional fatigue, as well as severe GI problems, neurological problems.
After several years of high dose abx therapy, his immune system was going wild - auto-immune, reacting to everything.
The LDN has gotten him out of bed where he used to spend days at a time. The turnaround has been remarkable.
He is now on the threshold of being able to tolerate medications and supplement that in the recent past would practically kill him.
Posted by AliG (Member # 9734) on :
^
Posted by D Bergy (Member # 9984) on :
I think this is a good example of how LDN can help even with Lyme. It will not cure anyone, but if your immune system is whacked out you can hardly improve much.
It can bring your immune system to a more normal state so you have a fighting chance.
D Bergy
Posted by WIGGY (Member # 15377) on :
I Love LDN. Began taking in 2004 and it stopped the progression of my MS per mri. I started at 1.5 and worked up to 4.5. Increased energy, allowed me to sleep again, a great sleeping pill with 0 side effects for me.
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